Friday, 18 March 2016

It was a sad day when the foam padding the handle of my favourite walking stick finally started to
fall apart.

After searching everywhere for either a replacement piece of foam, or an identical stick, I came up with something a little different.

I went into a sports shop. That's something that doesn't happen often. And I bought the tape that goes on the handle of a tennis racquet.

It could have replaced the foam, but I put it on over the foam, pulling the broken bits back together as I went.

This works! My favourite stick has been saved, and it's just as comfortable to use as it was before the foam started to come apart.

Oh, the little thing attached to the stick near the base of the handle allows the stick to be balanced on the edge of a table - so I can just pop my stick on the table beside me when I have coffee out or whatever. You can usually find them at pharmacies. (Brain fog won't let me remember what the gadget is called, but if you tell the pharmacy staff what it does, they will know what you mean.)

Thursday, 17 March 2016

Try playing these point and click games. (They're flash games, so they will only work if your computer has flash installed.)

This series of games is by Carmel Games. I like their stuff because I don't need fast reactions to play.

These games help provide a little challenge, enough to force a foggy lupie brain to do some thinking, but not impossible.

It's just one of many ways I waste time when I'm not feeling well, and want to at least exercise my brain a little.

Depending on how foggy you are, you may not need this advice: When you follow the link, you will get to a page, with an ad on the top, you need to scroll down to the screen with the game, and you will have to watch an ad (you can skip after the first five seconds) before you start the game.

With careful management, it’s possible for many people to live quite a long time with lupus – but quality the quality of life is variable. Lupus is episodic, and patients may go for weeks, months, or even years with little disease activity. Some patients even convince themselves they are “cured”, and stop taking their medication. Sadly, there’s always another flare. It will usually come without warning.

In the attempt to live a little longer, or with a better quality of life, we take the toxic drugs our doctors prescribe.

And these drugs are toxic. There has so far only been one drug developed specifically to treat lupus. Benlysta was, at least partly, the product of research at Australia’s Monash University. It’s accessible in Australia, but not on the Pharmaceutical Benefits Scheme, so no-one can actually afford to use it.

What we do have are drugs that were developed for other conditions, that have been found to help.

Plaquenil, is actually an antimalarial drug, and patients who take it need regular eye checks because Plaquenil can cause blindness.

Methotrexate, is a chemotherapy drug used for cancer patients. Cancer patients have high doses for one or two brief periods. We have low doses every week for, well, for ever unless it stops working. It’s used to kill off part of the immune system to help keep it under control. It means cuts and bruises take forever to heal, and it depletes our bodies of the folate needed to absorb iron.

Steroids, also help to slow down the immune system, but they also cause high blood pressure, weight gain, bone thinning, and (turn around to show) this lovely little “buffalo hump” at the base of the back of the neck.

But wait there’s more – although I guess you get the point without me detailing another dozen or more drugs we use.

So we have treatments, although they’re far from perfect. What we don’t have, and desperately need, is a cure

So far the only known cure for lupus is death.

There are researchers working on the problem, developing better treatments, working slowly towards an ultimate cure.

You don’t hear much about these researchers. People don’t stop you in the shopping centre and ask you to donate. No-one’s going to sell you a flower to raise money.

The organisations that fundraise for medical research for diseases like cancer, are made up of people who have survived those diseases, those who’ve got better.

No-one with lupus, gets better. There’s no big fundraising organisation. (Not here in Australia, anyway.) If you want to support lupus research, you have to go looking for researchers to support.

One place you can look is my blog, sometimesitislupus.com. There you’ll find links to donate cash to two different university teams researching lupus.

The team at Monash University is looking at developing more effective and safer drugs to treat lupus. The team at Australian National University is using an individual patient’s DNA to determine which treatment is the best for that individual.

They’re not at the point of a cure yet, but they’re at least working towards it, and you can help them.

So where are we right now?

Thousands of Australian lupus patients are trapped in a real-life nightmare, taking toxic drugs to stay alive, and desperately hoping for a cure. Right now that cure’s a dream, a vague hope. Maybe one day it will be a reality. Maybe you’d like to help make it a reality.

Tuesday, 8 March 2016

In my ongoing struggle to lose weight while taking prednisone, I found myself reading "Fat is a Feminist Issue" by Suzie Orbach. (The Kindle version I bought has both the first and second books.)

Orbach is a psychotherapist, and her books look into the psycho-social development of women and our relationships with our bodies, and how this leads us to the constant dieting/bingeing cycle that so many women (and increasingly men as well) are so incredibly familiar with.

The book reminded me very much of Dr Dorrie McCubbrey's "How Much Does Your Soul Weigh?" that I read a number of years ago.

Both authors say the solution to the problem isn't yet another diet. It's about understanding our relationship with food, with our bodies, with how we see ourselves.

For those of us who have repeatedly gained and lost weight, the cycle can seem like it has no end. Each time, it gets harder to keep control, to stay disciplined enough.

Both Orbach and McCubbrey say stop being so disciplined. Stop fighting for control. Stop seeing food as the enemy. Start understanding why you eat the way you do.

Years ago, when I first read McCubbrey's book, I did a lot of work on my emotional relationships with food, the memories food brought up, the fear of scarcity, of not having enough or not having my share.

Revisiting this again, I think there is now just one main reason I do still binge.

On what I call a "normal" day, I will eat far less food than Calorie King would allow me. That's not because I'm super-good or super-self-controlled. It's because I've eaten enough and I'm not hungry any more.

But once or twice a week, I will break out and have a binge. I will eat until I feel sick an keep eating. I won't care what I'm eating. Reading Orbach's book has helped me pull myself up mid-binge and work out just what was going on.

Are you ready for this?

It was fatigue.

I was so exhausted I was trying to give myself an energy boost by eating.

Do you know what? It doesn't actually work.

Sometimes I can overcome fatigue for a short while by drinking lots of coffee, but most of the time, really all I can do is sleep.

Instead of kidding myself I'm fine and can just keep going and going, I actually need to stop when I'm tired and have the rest my lupie body is demanding.

Bingeing won't fix it.

From now on, when I'm tempted to binge, I'll go and lie down first if the option is at all available.

Will that make me lose weight? I don't really know. I'm taking prednisone, after all. I don't know how it works, but I do know that prednisone has done all kinds of weird things to my body - such as make me retain stupid amounts of fluid and give me a problem with high blood pressure (when my blood pressure was always just a tad lower than it should have been before.)

I do know I feel much better when I'm not shovelling in food I don't want in an attempt to achieve the impossible.

Wednesday, 2 March 2016

"Medical marijuana" has been the topic for a lot of news reports lately.

The Federal Government has given the green light for it to be produced and the eastern states, at least, have made moves towards doing human trials on the use of marijuana in specific conditions, and the Queensland Government has a bill proposing making it legal on prescription.

Let's start with a basic fact: just because something is natural or even legal doesn't mean it is safe.

For example, natural supplements, that were available over-the-counter or over-the-internet have caused liver failure and even death in some people. The problem? Some things that are safe in small amounts are toxic in large amounts. (The water in your tap contains chlorine and is safe - but if you drank straight chlorine, that would be very, very bad.) Another problem, for people with health issues, is that some things have negative interactions with our medication. (Have you noticed that Methotrexate sometimes comes with warnings against eating grapefruit? Methotrexate can make the usually-harmless vitamin C into something dangerous if you have too much.)

At the moment, I don't think there's been enough scientific research for me to be confident to take it. (I can't tell you what to do with your own body, so if you disagree with me that's fine.) I'd like to know more about side effects and drug interactions before I was comfortable to agree to it being added to my drug cocktail.

I do like that, like other narcotics, it will be a prescription-only drug. That means that not only a patient, but also a doctor who should be keeping up to date on the research would be looking at questions like: is this drug better for this purpose than the other options? Is this drug safe for this purpose (taking into account the patient's condition, other medications, etc.)

I know there's a lot of anecdotes on the internet about cannabis curing all kinds of diseases. I feel safer with medicine based on scientific evidence, rather than anecdote, but maybe that's just me.

All in all, increasing treatment options is a good thing. But a new option is just another new option, and the risks and benefits for each patient need to be weighed up the same as with every other treatment option.

Other blogs and books by the same author

Blogs

Patchwork

Patchwork is an anthology of short stories and poems by author and blogger Iris Carden. In this volume, you will deal with the aftermath of a dog bite in Bad Moon Rising, spend a sleepless night with The Possum in the Roof, and investigate a weird religious cult in The Time of Blood and Death. The print version of the book has a bonus story not in the eBook version.

Beside Still Waters

A book of sermons and brief reflections on Christian Scripture, by Rev Iris Carden. There is no specific order to the items in the book, they are intended to each be a "surprise" in that they are not related to the items around them. It is hoped that in each, the reader will find something new or special, or unexpected, a message from God. Rev Iris Carden has a Master's Degree in Theology and more than 10 years of experience as a Christian minister.

Cat-it-orial

Mr Bumpy is such a talented cat, he even runs his own website: mrbumpycat.com. He is a blogger, and a very bad cat. His favourite hobby is world domination. His next hobby is harassing the humans and other animals he shares a home with. In this book, you can see the world through the eyes of a megalomanicat, and some of the other animals who share his home.

Group Meeting

(Novella) In a facility for people recovering from mental illness: a group of people with sinister pasts starts to be visited by a girl who doesn't exist.

Karlee

Failing author Terry Dixon is made an offer that seems unbelievable. He can have all of his problems solved, have everything he has ever wanted, for a price. The price is something that "will not be too difficult" for him to pay - but it is not specified what it actually will be. With bills mounting up and a deadline looming, Terry agrees to a deal with something he knows nothing about.

About the Author

Iris Carden is a retired Uniting Church minister and former journalist. Lupus forced her to stop working. On good days she writes.

I've been nominated. Please endorse me.

This is an Australian Blog

Some of the issues, resources, information discussed may not be relevant to overseas readers. (Some things may not even be relevant outside of Queensland.)

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Contact Me

My email address is iris@sometimesitislupus.com

Have Something to Share on Sometimes, it is Lupus?

Lupus Links

Do you run a lupus-related website, or blog? Submit your links for the Lupus Links Page by emailing iris@sometimesitislupus.com and using the subject heading "Lupus Links." Tell me your page name and web address. If you have a social media page for lupus awareness/support, you will find you can now add your link to the page directly.

Lupus Business Directory

If you have a chronic illness and own/run a business, you can submit it to the Lupus Business Directory (listing is free). Email iris@sometimesitislupus.com using the subject heading "Lupus Business Directory." Give me your name, your chronic health condition, the name and web address of your business and a picture if you'd like one included.

In Memorium

You can add your personal memorial messages in memory of lupies who have fallen in the battle against the wolf in the comments section of this page. Or you can email them to iris@sometimesitislupus.com with the subject heading "In Memorium".

Warriors' Wall (goes live World Lupus Day, 10th May 2013)

If you are a lupus warrior who has something to say, please email iris@sometimesitislupus.com with the subject heading "Warriors' Wall". Include in the email, a nice clear photo of you, your first name, year diagnosed, country, and what you want to tell the world about lupus. (Up to 100 words.)

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